After a bit of a hiatus, I am happy to report that our baby girl was born happy and healthy on May 22, 2014. She is now 3 months old and has been a dream baby! She eats well, has slept great from day one and I can already tell she is very determined to be up and mobile as soon as possible; she is so physically strong! But I’d expect nothing less from our paleo baby. ;)
I had planned on writing about today’s topic for a while, but I had no idea that by the time I got around to it I would be writing it with firsthand experience. So unlike my other posts, which are highly informative, this post will be a bit more personal. But after my experience, I am so passionate about this issue and want to help get this information to all soon-to-be and new parents because I think it is an issue that often goes undiagnosed. Today’s topic is about a simple check that all new parents should be performing on their newborns, after counting those ten fingers and ten toes, of course.
When our daughter was born, I knew I was going to check whether or not she had a tongue-tie and/or lip-tie. Lucky for me, the nurse that was at my side when my daughter was born, and who was going to help with initial breastfeeding, immediately began looking in my daughter’s mouth and noted what she thought was a possible tongue-tie. I clearly saw the short frenum attachment (tissue attachment) on the underside of her tongue. The nurse basically told me that her tongue-tie may or may not be an issue, but to see how breastfeeding goes. I wasn’t given any further information from the nurse and the lactation consultant that visited me the next morning did not discuss it either. Thankfully, I had read about tongue-ties and their effect on breastfeeding extensively while I was pregnant.
We were released from the hospital just over 24 hours after our daughter was born because I was feeling great, baby was healthy and she was eating like a champ. I was a new mom and didn’t know what breastfeeding was supposed to feel like. Everything you read says that it will likely be a bit uncomfortable or painful at first, but that by two weeks in any discomfort should subside. During those initial weeks, breastfeeding was uncomfortable or mildly painful, but I wouldn’t describe it as excruciating (but I do have a high pain tolerance). It wasn’t until a few days after the two week mark that things went drastically downhill. Breastfeeding never got what I would describe as comfortable, but now I was suddenly experiencing much more painful breastfeeding due to cracks and sores that were not healing and getting worse. I also started experiencing an intermittent burning sensation in my nipples that was pretty painful as well; sometimes it literally felt like my nipples were on fire! I had seen a lactation consultant and knew that latching was not the issue here, and if you do any Googling on “burning nipples and breastfeeding” what will turn up is that it is a thrush/yeast infection. However, when I read all the symptoms of thrush that you may notice with yourself and with your baby it just didn’t seem to be what was going on. I didn’t have an answer for the burning sensations, but I was sure the tongue-tie was the culprit behind the painful breastfeeding and the cracks/sores that were not healing since she was not able to get her tongue extended enough under the breast and nipple to perform a milking action and breastfeed properly. Instead of being able to “milk” the breast she was gumming me and using a lot of suction to stay on the breast since she could not latch deeply enough. OUCH!
After doing a bit more research online, I found that it was an ENT (Ear, Nose & Throat doctor) that I’d want to see to evaluate and correct my daughter’s possible tongue-tie. I also looked at the tissue attachment under her upper lip right above where her future two front teeth will be. This area concerned me as well because the frenum here attached down at the bottom of the gums. If left untreated this would likely cause a space between her two front teeth and could increase the risk of decay on her upper front teeth because this area could trap food and saliva may not be able to access the area sufficiently to clear food from the area and remineralize the teeth. The tongue-tie was already causing issues with breastfeeding, but if left untreated it could also potentially cause speech issues in the future.
I quickly called the ENT clinic in my area and made an appointment for my daughter to be evaluated…but they didn’t have any openings for a week! UGH! But I sucked it up…and basically lived on Tylenol or Advil to get through it! When we saw the doctor, he immediately noted the restrictive frenum attachment under her tongue, but he did not think the upper lip-tie was an issue. I was shocked and disagreed, but didn’t say anything and just figured I’d have it re-evaluated when she got a little older. I was mostly concerned with the tongue-tie/breastfeeding issues right now. He applied some numbing gel to the underside of her tongue (which made her fussy) and with a scalpel released the tie. It literally took less than 3 seconds. My daughter was just over 3 weeks at the time and the good part about having this procedure done before 6 weeks is that the tissue is so thin and has not yet developed nerve endings in this area, so there is little to no discomfort for baby, minimal bleeding and no need for anesthetic (other than some topical numbing gel) or stitches. The doctor left the room so I could nurse my daughter to soothe her and to see if there was any improvement. I didn’t notice much, but figured it was very early and she would need time to relearn to nurse properly. With no further instructions we left the office.
For the next two days I scoured the internet reading other mothers’ experiences with tongue-tie revisions. I wanted to know how long it would be before nursing would be comfortable. During my reading I came across a mother’s story of how she travelled from Texas to Portland, Oregon (close to my neck of the woods!) to see an ENT that specialized in this arena and have her baby treated. I quickly Googled this doctor and was thrilled with what I found!
While I was pregnant, I had become aware of the breastfeeding issues that can arise with tongue-ties by reading Heather Dessinger’s story on her very popular blog, Mommypotamus. I was aware that the leading doctor in the country on the issue of infant tongue/lip-ties and breastfeeding was Dr. Lawrence Kotlow. I read the stories of numerous mothers online that had their babies treated by Dr. Kotlow, who uses a laser to correct tongue and lip-ties (much preferred over a scalpel or surgical scissors due to less tissue trauma which means less bleeding and faster healing times). However, I am in Washington…and Dr. Kotlow is in New York.
After discovering the reference to a Portland doctor that did laser tongue/lip-tie corrections and Googling him, I found a wealth of information on his website about breastfeeding and saw that he made references to Dr. Kotlow’s work. I wished I had found this doctor a week before! After reading the information on Dr. Bobak (Bobby) Ghaheri’s website, I saw that he included an email address where he stated you could send him questions and pictures for advice. I immediately emailed him giving him a little background and telling him that I had already had my daughter’s tongue-tie corrected two days prior, but I was concerned about her upper lip-tie and sent him a picture. I told him I did not expect a diagnosis via email, but if it looked concerning to him I would schedule an office visit for an exam. It was past office hours so I really wasn’t expecting a fast response, but he responded that same evening! He told me the upper lip-tie definitely looked concerning. He then also informed me that nearly every infant he has seen that had already had their tongue-tie treated by a previous ENT only had half the job done; that ENTs will snip that visible frenum tissue (referred to as an anterior tongue-tie) but that in his experience there is always a posterior tongue-tie behind it, embedded in the tissue and rarely visible unless you know how to check for it. He stated most ENT’s are not even aware of what a posterior tongue-tie is, let alone know how to look for it. If this posterior tongue-tie is left behind, breastfeeding likely will not improve.
After corresponding with Dr. Ghaheri I knew I wanted him to evaluate my daughter. I contacted his office the next morning. After some discussion with his receptionist, and informing her that I had been in email correspondence with Dr. Ghaheri, she stated that his next opening was two weeks out but since I had already been talking with him she would ask him if I could get in sooner and call me back. I wasn’t expecting much, but she called a couple hours later and offered me an appointment for the very next day! I took it!
I’ve heard some theories behind the potential causes of tongue and lip-ties. Everything from too many ultrasounds during pregnancy to folic acid, which is the synthetic form of Vitamin B9. Folic acid is found in most prenatal vitamins and recommended for all pregnant women to prevent neural tube defects, such as spina bifida, in their babies. I knew neither of these could be the case. I only had two ultrasounds during my pregnancy and the first one was not until 20 weeks. The oral tissues were already developing by that point. I also was not taking folic acid; I was taking a B-complex supplement with folate, the natural form of B9.
My mother also attended our appointment with Dr. Ghaheri the next morning. After our introductions he promptly turned to my mother and asked her how I breastfed as a baby. My mother replied that nursing was easy and she had none of the problems I was experiencing. Dr. Ghaheri smiled and said, “Ok, looks like we’ll blame Dad.” His belief is that tongue/lip-ties are genetic, which I think is more likely. After discussing this experience with my sister-in-law, she informed me that she was told her daughter had a tongue-tie as an infant (but it was not severe enough to cause any breastfeeding issues) and to monitor her speech when she began to talk. She also told me about several members of their family that had speech issues and underwent speech therapy. She now wonders if it was due to undiagnosed tongue-ties.
Dr. Ghaheri discussed my physical symptoms with me: the painful breastfeeding, the cracks/sores that would not heal and the compressed, “lipstick” shaped appearance of the nipple after the baby feeds. Oh, and those burning sensations? Dr. Ghaheri explained that it was not thrush (as is often misdiagnosed when tongue-tie is the real issue), but vasospasms due to nipple trauma and that after the ties are corrected and baby is able to latch correctly (ending the trauma), those will go away with time as mom heals. Before even looking in my daughter’s mouth, he pointed out the white/blanched color of her lips and the bulbous, blister-like looking bump in the middle of her upper lip, both classic signs of a baby with a tongue-tie that cannot latch properly and therefore uses a lot of lip force and suction to stay on the breast. He examined under her tongue and stated that the anterior tongue-tie had been corrected, but showed me that the posterior tie still remained which was keeping the central part of her tongue inhibited from rising up and performing a milking action during nursing. When he looked at the upper lip-tie he was shocked to hear the previous ENT thought it was fine! Dr. Ghaheri explained that not only would it lead to the dental issues I was concerned with but that it was also keeping her upper lip from flanging out over the top of the breast during nursing. That was the cause of that blister on her upper lip. I felt so relieved to have found someone that fully understood this issue! Dr. Ghaheri informed me that the relationship between tongue/lip-ties and breastfeeding is never discussed during their education; Dr. Ghaheri took it upon himself to learn about this after his wife experienced these same issues with their two daughters who were also born with tongue and lip-ties. I can tell that Dr. Ghaheri, after experiencing this issue within his own family, has a lot of compassion for breastfeeding mothers and I’m sure that’s why he squeezed us into his schedule so quickly.
Dr. Ghaheri applied some topical numbing cream and took my daughter into another room for her quick 30-second laser procedure to correct both ties and brought her right back to me. She was completely calm and quiet when he brought her back into the room and she had minimal bleeding. She only began to cry when she laid her eyes on me and realized she was being held by someone else in a strange place. He told us to stay as long as we wanted so I could breastfeed her and soothe her. Ten minutes later, he came back to check on us and asked me how breastfeeding felt. This time I was amazed! I told him it was the first time I had ever felt her use her tongue! She only used it a short time before she reverted back to her old way of nursing, but this was because her tongue needed time to build up the strength and stamina needed to nurse the entire feeding time. Dr. Ghaheri had me schedule a follow-up appointment for the following week so he could check on her healing and our progress. He also sent us home with detailed exercises/stretches we were to perform on her to prevent the ties from healing back together and to keep any scar tissue that developed elastic rather than stiff which could hinder her tongue’s full range of movement. Everyday, nursing got better and better. It only took about a week or so for my daughter’s tongue to strengthen enough to last during feedings. I literally was in awe every single time I fed her saying to myself, “So THIS is what breastfeeding is supposed to feel like?!” No pain at all! I could finally enjoy this time with my little one.
After the revision, Dr. Ghaheri referred me to lactation consultant, Bryna Sampey, IBCLC who understands this issue fully. She not only worked with me and my daughter on latching, but also gave us exercises we could do to speed up the process of strengthening my daughter’s tongue so breastfeeding would become comfortable even sooner. Her wealth of knowledge is unsurpassed! Bryna then referred me to Karen Asbury LMP, LMT for a couple sessions of craniosacral therapy for my daughter. Many chiropractors are trained in craniosacral therapy as well. The chiropractor I saw during my pregnancy, Dr. Janell Chandler of Nexus Chiropractic, also specializes in pediatric chiropractic and is trained in craniosacral therapy. I had Dr. Chandler see my daughter for several visits as well. Craniosacral therapy is a form of therapeutic touch bodywork that is very gentle. This therapy can be very beneficial for an infant that has undergone a tongue-tie revision because babies with tongue-ties tend to also have very high arching palates. While in the womb, babies begin practicing sucking and swallowing in preparation for breastfeeding. If a baby is tongue-tied and their tongue cannot reach their palate, their palate does not receive the needed mechanical stimulation I discussed in a previous post to help create a wider, lower palate. This high arching palate is one of the reasons a mother will often see a compressed, “lipstick” shaped nipple after her baby feeds. I’ve discussed on this blog the nutrition needed to help create a wide palate here and here, along with the mechanical stimulation needed to create a wide palate here and here, to give children the best odds at straight teeth. I provided my daughter with the needed nutrition during my pregnancy and now it was even more important that I discovered the tongue-tie, had it corrected and continued to breastfeed to give her palate the much needed mechanical stimulation to widen and flatten it out a bit. Craniosacral therapy can help to move the palatal bones a bit quicker to again make breastfeeding more comfortable sooner. It can also help to release tension in a baby’s jaw and neck musculature that will often be tight due to how hard they had to work before to get milk while nursing. It only took a handful of craniosacral therapy sessions and a few weeks of breastfeeding to move my daughter’s palate into a more favorable shape; my nipples no longer come out compressed and clamped after she feeds. This also means no more trauma and the vasospasms have completely disappeared. Not only has breastfeeding become comfortable and pain-free for me, but it is now much easier for my daughter to get milk as well. She used to have to nurse for 45 minutes to an hour to be able to get enough milk, leaving her exhausted; after having her ties corrected she only needs 15 minutes, leaving her time to play and explore!
On the way to our appointment with Dr. Ghaheri, my mother asked me how common was this whole tongue-tie/breastfeeding issue. I told her I had read differing reports. Some said 4% of babies are born with ties, some said 10%. I told her I don’t think we really know because I think ties go highly undiagnosed; many pediatricians and lactation consultants are unaware of them and don’t check for them. It used to be commonplace to check all newborns for ties, but in the 1950’s when infant formula became touted as the best nutrition for baby breastfeeding rates dropped and checking for ties became unnecessary since they rarely affect an infant’s ability to obtain milk from a bottle. But now that breastfeeding is in favor again, we need to bring back routine checks for ties when babies are born. I don’t know a true statistic for how common ties are, but I can tell you this. From checking in to leaving Dr. Ghaheri’s office we were probably there about an hour, and in that time we saw 3 other infants there for the same procedure. Seems that this is pretty common!
Having breastfeeding issues? Here are the signs to look for that may indicate a tongue-tied baby. You and your baby may be experiencing all of these symptoms or just a few.
- Painful or highly uncomfortable breastfeeding
- Flattened/compressed/clamped/creased nipple after nursing that may resemble the shape of a new lipstick
- Plugged ducts-baby is unable to fully drain milk from the breasts
- Decreased milk supply-baby is unable to stimulate breast sufficiently to maintain milk supply
- Difficult latching or maintaining latch
- Fussy at the breast
- Generally fussy, often misdiagnosed as colic or reflux
- Long nursing times
- Baby is constantly hungry
- Poor sleep due to always waking up hungry
- Gumming, chewing or sucking just on the nipple during nursing
- Makes a clicking noise while nursing
- Choking on milk or comes off breast to gasp for air
- Unable to hold a pacifier
- Gassy-baby will often take in more air when there is repeated attempts to latch
- Blister on upper lip
- White/blanched coloring of the lips
- Poor weight gain
If you are experiencing any of these symptoms and suspect a tongue and/or lip-tie, here is what to look for from Dr. Lawrence Kotlow:
The #1 mistake doctors and lactation consultants make when checking for a tongue-tie is incorrect positioning of the baby during the exam. (The first ENT I visited did not examine my daughter in the proper position.)
Once baby is in proper position, here is what to look for:
You can check for a lip-tie with baby facing you.
Help spread the word about infant tongue and lip-ties! Share this with the pregnant mamas and new parents in your life. You just may spare a mama a lot of heartache (and other aches!) that wants to breastfeed her baby.